Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

After a couple of brain surgeries, he now has Complex
Partial Seizures which last (for him) between 10 seconds and five
minutes.

Over time, I was able to get used to most of his
seizures. I knew what to expect. Since Robert
moved in with us, my husband and I keep a log of his seizures. This log is
probably why I was so detail-oriented with my Caregiving
Day Log. It’s amazing how much can
happen in 10 seconds Ten seconds doesn’t seem like a long time but try writing
down everything you do in 10 seconds. It’s probably a lot more than it seems.

A typical entry into Robert’s seizure log for a 10 second
seizure: “While washing his face; rt hand slowly went down; head to rt.”

Typically, he has his seizure, I wait and watch to be sure
it doesn’t go into a longer, more unusual seizure and then he finishes up
whatever he was doing. Robert doesn’t
like to say he had a seizure and prefers to tell me he “fought it off.” I used to correct him and tell him he did in
fact have a seizure but soon realized how important it was to him to be able to
believe he was fighting them off. I no
longer try to take that away from him. I
discreetly log the seizure and help him with what he was doing.

Those seizures don’t scare me. I am used to those and recognize they are
just part of our day. They are part of
every single day. My log for February shows
Robert having more than 60 seizures – and those are just the ones Richard or I
witnessed.

This week, Robert had two seizures that were longer than
usual, different in what happened during them and, frankly, scared the crap out
of me.

Both were during his morning bath. Robert and I have developed an excellent
system for his morning bath which was borne out of necessity since we don’t
have a downstairs shower. Robert sits on top of the toilet and I hand him a wet
washcloth. While he’s scrubbing his face, I wash his hair. I then give him a
dry washcloth to dry his face and hair.
While he’s doing that I get another washcloth wet and soapy and give him
that to wash the rest of himself. Once he’s
done, he stands up, holding on the grab bars, and I wash and dry his back. He usually has a quick seizure at this point
and I put a towel on his and hold him up if he starts to lean or fall
backwards.

The seizure almost always lasts for 10 seconds and then he
sniffs or giggles and I have him sit down to finish drying off.

One of the scary things about seizures is they are
unexpected. I considered it a win that I
could expect this seizure in the morning while washing his back. I could prepare for it which is what we always
want to do with seizures.

Wednesday was different.
Robert was standing; I was washing his back. He dropped his head like
usual and I grabbed a towel and held it against him, expecting to wait 10
seconds.

Ten seconds passed and his head went further to the right and
his legs gave out. As he was crumpling to the floor, I tried to hold him up to
no avail. He’s 213 pounds and feels about double that when he’s dropping to the
floor. I am just not strong enough to hold
him up.

I slowed his slump but couldn’t keep him up. I called for Richard but by that time, Robert
had turned his body so he was facing another wall and was already on his way
down. I had him under his arms and I was doing my best to keep his back from hitting
one wall and his head from hitting another wall (success with the back; not so
much with the head). Richard and I tried to move
him so his back wasn’t leaning against the bookcase in the bathroom or didn’t
hit his head again but his legs were jammed under him and against the
toilet. I put a towel between him and
the bookcase and kept his head away from the wall.

With the three of us in this tiny bathroom and Robert’s
limbs going in all directions, it looked like a Twister game gone wrong.

My fear was he was going to break his leg.

Robert came out of his seizure after a couple of minutes but
was very confused. Taz managed to squeeze into the bathroom and proceeded to
lick Robert’s arm and ear. Robert was too confused to even manage to look
annoyed.

It took quite a while for Richard and me to get him to move so
he was in a more comfortable position. Once Robert was back seated on the
toilet, I checked him for bumps and bruises and he only had a little
scrape. Thank goodness but it was
extremely disconcerting and I was very upset thinking he had come close to
breaking a bone.

Thursday brought yet another different seizure. This time, I
was more prepared. Robert was having his
usual seizure during his back washing and also saw his head move further to the
right. I called for Richard to bring the walker, thinking I could lower him
into the walker before he slumped to the floor. I kept Robert from twisting his
body this time but he still slumped to the floor. This time he was on one knee,
head against the wall and his other leg was scrunched under him and wedged
against the wall. This time, I feared he
had broken his knee cap because his knee was extremely red.

This seizure kept going.
Minutes ticked by and his breathing was labored, then he was
moaning.

Then, silence.

In that moment, I thought he stopped breathing and I thought
of all the children and adults who have died of SUDEP. I told Richard he stopped breathing and,
because of Richard’s position, he could see Robert breathing and told me he
was.

Now I could breathe again.

Within seconds, Robert started pleading, in a soft, pained
voice: “Help me. Help me. Help me.”

I could feel my heart shattering into a million pieces.

Is he hurting? Is this what is going on his head with each
seizure? How can I help him?

Richard and I were able to move him a bit and got him up on
the toilet. He was extremely confused and groggy but out of the seizure long
enough for me to give him an Ativan which is my go-to drug in case of the seizure
clusters or a prolonged seizure. (I have Diazepam but it is administered
rectally which is usually impossible. We
came close to using it this time since he had been in mid-bath but was able to
take the oral medication instead.)

Robert was confused but was finally finished with his
seizure. I checked him for any bruising or bumps, Taz got in a few
licks and then I helped him dress, Richard prepared his breakfast. I took him to a previously scheduled
appointment with a podiatrist and then after dropping him off at Day Program, I
went into work.

Richard was able to find a shower chair for us to use since
a short, 10 second seizure while I am washing his back is no longer something I
can prepare for.

This morning we used the chair and it worked perfectly. Robert didn’t have any seizures and he was
able to get cleaned up easily.

The neurologist added a new medication to Robert’s
regime. If it works, we can eventually
try reducing one of the other seizure medications.

I don’t like changing his medications around but he is
having way too many seizures. We have to
do something. Robert started this medication
yesterday so we will watch for any awful side-effects and hope for a reduction
in his seizures.

Changing Robert’s medication scares me and these seizures
scare me but I have to set aside those fears.

That is how I am going to help you, Robert.

(Richard, my husband and co-caregiver, also wrote about this
experience from his perspective which you can read on his website PickYourPain.org.)

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Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.